Breaking the taboo
Monday 15th March, 2010
Patients, family and others in the community as well as health and social care professionals are being encouraged to break the ‘taboo’ and talk about death and end of life care as part of Dying Matters Week from 15-21 March.
“Most people still think of death and dying as a ‘taboo’ subject best avoided. Research suggests that only one third of the population has discussed their end of life care with someone. People are being encouraged to make sure those closest to them know their end of life wishes when that time comes,” said Kristiina Parkinson, Assistant Programme Director covering end-of-life care at NHS West Sussex.
“This is an important subject for individuals and their families, friends and carers and to NHS West Sussex as a commissioner of services. One of our strategic goals is to increase the number of people who die at home or in a setting of their choice.”
National research suggests that 70 per cent of people say they would rather die at home while 60 per cent of people still die in hospital. However, pioneering work in one part of West Sussex confounds this picture with the number of local patients able to fulfill their wish to die at home rising from 36% in March 2006 to 76% in December 2009.
The Midhurst Macmillan Specialist Palliative Care Service is available to patients within a 25 mile radius of Midhurst. The service provides specialist palliative care in patients’ own homes and a variety of community settings, rather than hospitals or hospices. It offers a wide spectrum of care, from active intervention through to end-of-life, and is thought to be the first of its kind in the UK. A patient and carer satisfaction survey in March 2009 showed that 89% of carers were confident in caring for their relative at home with the service’s support, while 93% received as much support as they needed from the team.
The key to the success of the service is the role played by a patient and carer group. Members’ experiences of palliative and end-of-life care enabled the project team to develop a totally new model of care that centres on allowing people to lead as normal life as possible, and stay at home without frequent visits to hospital.
Work being carried out across West Sussex into advanced care planning will be the subject of an end-of-life care day taking place in Horsham on 15th July aimed at all care professionals and other interested organisations.
Sandra Vargeson, End of Life Care Co-ordinator for West Sussex Health, said: “I commend the Dying Matters campaign and efforts to reduce the stigma of discussing death and end of life wishes such as a desire to die at home. Our day will focus on the progress that has been made towards implementation of community end-of-life care pathways over the last 12 months, which includes capturing patients’ wishes, by using some specific case studies.
"Our intention is to concentrate on 'non-cancer' patients, who form three-quarters of the population, as cancer patients are currently better provided for. The day will bring together a broad cross section of care professionals from both national teams and those involved in 'virtual wards' programmes to those working in care homes.”
The nationwide Dying Matters campaign is being coordinated by the National Council for Palliative Care (NCPC) via the Dying Matters Coalition. It has just under 7,000 members, including organisations from across the NHS and voluntary and independent health and care sectors.
The coalition’s role is to support changing knowledge, attitudes and behaviours towards dying, death and bereavement.
For more information on Dying Matters Week, visit www.dyingmatters.org